Kaitlyn's Korner: July 2011

Monday, July 25, 2011

What a magical day!

Kaitlyn's birthday party was amazing! It meant so much to us to have so many of our family and friends there to celebrate her big day! Thank you to everyone who made it special for her. There are few things that Kaitlyn truly enjoys and those are people, bright colors and music. Our goal was to have all of those things included into her party so that she would enjoy it as much as possible.

Thank you also to those who donated their services:

Balloons 2 U Now for the super cool under the sea themed balloons
Centex Homes for covering the cost of the clubhouse rental
Icing Smiles for coordinating the ultimate cake
L3 Cake Creations for baking the awesome under the sea cake
Mr. Nigel and Friends for the fun and exciting music
Stephanie Egan Photography for capturing the special moments of the day. There is also a really nice article on her blog about Kaitlyn.

From the bottom of our hearts, THANK YOU to EVERYONE who made her day special by coming to her party and those far away wishing her a happy birthday. Here are some photos from the party!

Friday, July 1, 2011

Happy 2nd Birthday!!!

Happy 2nd Birthday to our sweet girl today! We are so thankful to be celebrating another birthday with our precious daughter, Kaitlyn. It is amazing how much about life she has taught us in such a short amount of time. We are so lucky to be blessed with such an amazing, spirited little girl.

Tomorrow we are celebrating Kaitlyn's big birthday with a big party with lots of family and friends! We can't wait to share more pictures and tell you all about it. :-)

About Niemann-Pick Disease

Niemann-Pick Disease is a lysosomal storage disease that affects metabolism and is caused by genetic mutations. In order for a child to have Niemann-Pick Disease, both parents must be carriers of a genetic mutation causing Niemann-Pick. There are three types of Niemann-Pick Disease, Types A, B and C.

Kaitlyn had Niemann-Pick Disease, Type A, the most severe of the three types. She lacked an enzyme called acid sphingomyelinase. Since she didn't have this enzyme, her body couldn't get rid of sphingomyelin. Sphingomyelin has nowhere to go so it accumulated in her cells, eventually causing cell death and the malfunction of major organ systems.

Those with Type A typically live to be only 2 to 4 years of age. There are approximately 1,200 cases of type A and B worldwide with the majority being Type B. There is currently no treatment or cure for the disease. When Kaitlyn was alive, she was 1 in 5 in the United States with Type A.